Has anyone actually tried to discuss the disease with their loved one?

The problem is not with "talking about dementia;" the problem is that the person with dementia may either feel he/she doesn't have a problem or can't remember the discussion about "the problem." I like the movie "50 First Dates" about a guy who loves a woman who can't remember anything from the time after her car accident that caused her memory problems. He comes to realize that he actually helps her to fall in love with him every day. Sweet movie. Also points out the difficulties of "reminders" that never get remembered. The best option may be to let your husband know you love him and are there to help him when he needs it.

My father never believed his diagnosis of vascular dementia. He told the doctor he would know if he had it. Doctor of course said no that’s not always true. I too tried to talk to him about it but he wouldn’t accept it (until I read an article that said do not try to convince them they have it). He later called my sister and said he felt he was being attacked by the doctor and treated disrespectfully as he honestly did not believe he has it. It makes things a little harder, trying to convince him to let me take over certain things he needs help with when he still feels he can do things on his own. However, I’m wondering if it’s best the best way. I probably would not want to know either if I develop it.

Imho, it seems to be a taboo subject because it's scary. My sister in law is 4 years into the disease, but not many of her family members have been told of it. They continue to post birthday wishes on her old social media account, which of course, goes unused.

He doesn't want to talk about it because it is scary as all get out. We are all going to die at some point and those of us in our 70s are closer than most of us like to think but while we may take appropriate measures - updating wills and medical proxies, we don't generally sit with the neighbors over cocktails and discuss how great it is going to be to die. With no cure in sight he knows the eventuality of losing himself and that is very scary and depressing. Now you on the other hand may want to talk about it. So as has been suggested, find some support group and come here often (you are allowed to vent) but unless he brings it up, there is very little to be gained by talking about it to him. Eventually, he won't remember the talks at any rate. Just try very hard to enjoy him and your life together every day.

I don't think it's taboo or a secret. You can bet when he's clear headed, he realizes he is not the same. He has lived long enough to know what is coming. Has he ever really been an emotional or deep talking person? Some people just don't discuss things that are painful.

When he lost a loved one, was there a lot of discussion between the two of you? Or maybe you just showed support for him by saying things when they needed to be said. Told him you loved him. Very simple things can tell your loved one how you feel and let them know they are safe with you.

Look at your local Alzheimer’s society webpage for lots of ideas. The stigma is real. People are often treated like children before It is necessary. They say “I’m not an idiot”! People can avoid those with Alzheimer’s as if it is catching. They often feel they don’t know how to talk to the person withAlzheimer’s and begin avoiding them. The Alzheimer’s society has lots of tips.

I wouldn't try to talk about it unless he brings it up and wants to talk about it. I could see if there are decisions to be made or strategies/problem-solving to do, but otherwise, why would it be helpful? If he wants to talk about it, he will, on his time. He may be getting a little defensive because you are the healthy one and he isn't. Be patient and let him know you are there for him. You can gently ask him if he wants to talk about it. You could ask him if he is worried. You can ask him how he feels. This opens a conversation if he is willing and ready. If not, respect that.

I have a good friend who has Parkinson's disease. He said he probably started developing it about 2004, but he only "acknowledged" it more publicly when he realized he could no longer hide it. As he put it, he's still capable of doing most things, but he tires easily, and he still wants to be considered a "functioning member of society". I only see him once every couple years, and one of the last times I saw him (before I knew), I noticed that he seemed to walk very slowly, like someone much older would, but this was before his mentioning it. Fortunately, he has a much-younger wife who's a physician, so he should be able to get the best care possible.

I'm mentioning this because I suspect that with any of these conditions which affect the brain, people still want to be considered "functioning members of society" as long as possible rather than someone "sitting on the sidelines with a T-shirt emblazoned with the name of the disease".

Who wouldn’t be terrified with such a diagnosis? The fear of losing your memories and your cognition, feeling your life slipping away bit by bit, has to be beyond scary. I can well see any of us in that position not wanting to discuss it, we’re all different, but for some it’s just too hard a thing to be reminded of

I do not recommend you bringing up the subject. If he asks you why he has problems, you can tell him about the diagnosis, but I would rephrase it to "dementia" - you are right about the stigma. With the minimal problems you describe, he's still cognitive enough to hear "Alzheimer's" as devastating news. What would be the purpose and what would you want him to do with the information?

Why do you need to talk to him about it? Deep down inside, I'm sure he knows, but what is the point of bringing it up since nothing can be done about it? The medications they prescribe do very little, or so I've heard.

It isn't stigma, it's fear, and I don't blame him. Of all the diseases of old age, this is the one I fear the most. Talk about what he wants to talk about and try not to dwell on his future. Let him enjoy his life as much as he can now.

No one who has Alzheimer's/dementia wants to talk about it even if they're still able to comprehend that they have it because talking about it makes it real. Just living life day by day makes it easier for someone to cope.
The person with the disease knows what Alzheimer's/dementia will do to them. They've heard all the stories and probably know people in a nursing home who are completely debilitated from it.
It's terrifying to know that you're losing your mind and unless you die, you will regress back into into infancy totally dependent on others for your most basic needs and won't even remember what day it is or recognize your own family. Even if someone is willing to talk about it, they know it will not change the outcome.
Your husband is coping with it in the best way for him and getting by one day at a time.

If you husband is like my dad was he doesn’t realize anything is wrong. My mom had a hell of a time adjusting to the repeated questions. She’d correct him and they’d have a big argument.

We learned pretty quickly that there was nothing to be gained by trying to convince dad that he had a disease, that his brain was failing. Even if we were to convince him of this at 4:00 it would be gone by 4:05.

So I used to gently remind him once in a while that his memory was not that good anymore and that he was getting up in years. He was good with that. You do what ever works to keep dementia folks calm.

Fear is at the root of your husband's unwillingness to discuss his disease, that's what I believe. You say you don't want him to be afraid or to fear anything, yet what's NOT to fear about losing one's mind? My mother has what I believe to be vascular dementia. She knows she's confused and she cries about it. It upsets her no end what's happening to her mind, so the last thing I want to do is ADD to her fears and worries by discussing it further with her. Instead, I try to calm her fears by telling her she's doing the best she can, that I'll help her remember when she forgets, things like that.

Alzheimer's is not 'taboo' or a big secret. It's a scary topic. Nobody wants it, we're all afraid of it, and men in particular don't want to be reminded by their wives what they're losing and no longer capable of doing, let's face it. Thank God your DH had it in him to give up his motorcycle on his own, bless him for that. Most of them go down kicking and screaming about how they're 'perfectly capable of driving' and yada yada. Be glad for that, right?

Wishing you the best of luck learning all you can about how to be the best support to your DH through this dreadful experience you're both going through. And GETTING all the support YOU need as well. AD affects BOTH of you, not just your husband.

I don't think there's a stigma, but what's the point of talking to someone about how they'll lose their memory, may become violent toward the ones they love, and could die because they lose their ability to swallow? What do you hope to accomplish with that conversation, because all it will do is terrify him until he forgets the whole conversation and you'll be frustrated that he didn't remember his promise not to get violent.

Join a support group instead. You need to be your husband's advocate and supporter, not his doctor, but you also need to be able to ask questions and vent -- just not to him.

The Alzheimer's Association website is an excellent resource for everything related to Alzheimer's and living with it. I suggest you check it out -- Alz.org

My husband loved watching movies and I used some of them as a chance to discuss his own ALZ. Head Full of Honey really resonated with him and we watched it over three or four evenings. I would stop the movie whenever he had a comment. First Cousin Once Removed was a very good documentary....not as interesting to him. There are some other films that might appeal of the actors are ones that your LO admires. Public libraries were my source for a lot of these....Head Full of Honey was on a premium channel that had a free week for us...not sure if it is available anywhere else.

I believe in honesty. Oddly it seems in my experience that when it is the female who is struck, others share the info with her. Males they do not. Also, it depends very much on stage, type of dementia, personality of the person.
My brother and I discussed his Lewy's Dementia constantly from the moment he was diagnosed with Probably Early Lewy's Dementia. He said that while he was not happy knowing what the future held, he was happy to know why he had nighttime dreamlike hallucinations, why he saw the world differently, why he had sudden difficulty with his swallow, why some patterns caused blank state and just going out (marble, hotel carpet, what have you). He became fascinated with what he had, and would tell others. He asked me to take over all finances, to send monthly statements to him, to give him an allowance account. He was a brilliant, loving, gentle man, and remained so until his death about a year and one half after his diagnosis. He was SO RELIEVED to know there was a reason he saw the world as he did. He would have been a marvelous research subject. Only you know the personality here. If you think about it, the big C. is a taboo also, until you GET it. Then we survivors delight in talking talking talking about it to others who understand. The taboo grows out of fear. Fear of ourselves, for ourselves and by ourselves. I sure wish you luck.

We're in our 11th year of either vascular dementia or AZ (probably vascular) and I explained from the beginning that sometimes we get hiccups which we have no control over. So when something comes up and it does frequently now - we try to lighten each situation with this hiccup. Assuring them you are walking beside them; assuring them you know it must be frightening at times; assuring the you are right here. Sometime when I get tongue tied I tell him - I'm having a hiccup and we try to laugh.

Reading on this forum, however, you will find each person is unique and what works for one - won't work for another. What works now - won't work later.

I don't discuss what the disease will do in the days to come - should it run a full course. I assure him in the moment. Stay safe and God Bless.

I am so sorry for your husband and for you, Cat.

Be the first one to openly talk about it. For me it was hard at first, but it got easier.

When I was Mom's live-in caregiver until she passed away, she had dementia. There were a couple times she became distraught because she knew something was wrong. Once she even pleaded with me to help her. Tore my heart out.

Each time, I gently told her about dementia, that there was no cure for it, but I was there to ensure she would be well cared for. Each time, she mulled it over, nodded, and seemed to feel better. Of course, she would forget the conversation, but at least for a short time she seemed to understand and feel better.

Side note: of a dear couple, the husband had Parkinson's. Even before he went into a hospice home a year ago, I was surprised and pleased how the wife and family and friends were so open about dying and death and talking with him about it. Everyone was relaxed about it. At his memorial service, the owner of the hospice and her husband, spoke about how being around my friends changed their lives!

Side, side note: A hospice dietician came with a hospice nurse to check on Mom. There wasn't much to discuss about Mom's diet, but the dietician, a young woman, sat beside Mom, held her hand, and just talked. Smooth as glass the conversation shifted to where she had Mom talking about fear of death (no) and dying. It was so beautifully done and such a beautiful conversation, I wept.

Hug and best wishes to you and your husband, Cat.

Alzheimer’s isn’t a “taboo” subject at all, but people who HAVE Alzheimer’s are in the process of losing the facility to comprehend and benefit from “discussion” about what is happening to them.

The very CONCEPTS of “memory” and “time” and ”past-present-future” are relatively abstract, and the odds that you and he would be on the same page when “discussing” them are becoming increasingly more and more remote as the physical parts of his sensory system decrease in their effectiveness.

So then, if you know that he has fewer and fewer tools to use in discussion, what would be of value to him or to you, to do this?

It depends on the type of dementia, how much interest your husband has always taken in his own health and how his own body works, and what it's important or useful for him to understand.

I remember that Jeanne Gibbs used to talk with her husband freely about his Lewy Body Dementia, and that when they had difficulties with his behavioural issues it helped that she understood and could explain to him what was happening.

I used to draw my mother rough sketches and diagrams to help explain her vascular dementia to her, when she got embarrassed or frustrated or anxious. Certainly I never tried to conceal anything from her.

There is stigma, but there is also fear and there is uncertainty - lots of big scary monsters in the landscape. Monsters are always better faced up to in my opinion, but I recognise that not everyone feels the same. It's very much an individual, and a fluctuating, situation; but you can find lots of advice from alz.org on living well with dementia, and that definitely includes not being afraid to talk about it!

I tried discussing it with my Husband but he would not.
But he NEVER liked talking about things like that. I used to tell him that when I died I wanted to be cremated, he would get upset and refused to talk about it.
I would tell him that I made him beneficiary on a policy and he refused to talk about it. So it was not unusual that he did not want to talk about his diagnosis.
But I wonder even early on maybe he did not fully understand what it meant.

As far as stigma you are right. But "we" have never liked talking about Mental Health issues. Just as in the 50's and 60's cancer was a taboo subject. Then comes the 80's with HIV and that was taboo.
As a caregiver and wife of a person that had dementia I used outings we had as a chance to be informative. If anyone made a comment about my Husband I would use it as a starting point. (he made noises and people thought he was crying and would ask if he was OK) Kids were great, they would ask and I would ask them if they had classmates with Autism. Most would say yes and I would just tell them that my Husband was like their classmates, that his brain did not work right. They get it!

For the person with dementia they spend so much time trying to cover up the confusion, mistakes. Doing that is exhausting and can lead to frustration and sometimes outbursts.
You will become his "safe person" and may become a shadow to you.
Just keep telling him that you love him and will be there for him.
Give him a hug. If he hugs back treasure it.

IMO the time for discussion was four years ago when he was first diagnosed. If HE comes to you with his fears or rants against his inabilities then of course you should talk about it, but if discussing it you mean continually pointing out his increasing needs and deficits I can't see anything positive coming from that.

I'm sorry to hear of his diagnosis. I'm wondering if you can provide the reason why you want to "discuss" it with him? What is the goal of the discussion with him? Thank you for the extra context so that the forum can give you it's best insights.